Family Caregivers’ Experience of In-home Knowledge Translation

1. Family Caregivers’ Experience of In-home Knowledge Translation Festival of International Conferences on Caregiving, Disability, Aging and Technology - Growing Older with a DisabilityFICCDAT 2011 June 5th – June 8th, 2011 Lynn Jansen RN, PhD (c), Dr. Carol McWilliam, RN, EdD Dr. Dorothy Forbes, RN, PhD, Dr Cheryl Forchuk, RN, PhD

2. Outline of Presentation • Background and Significance • Problem Statement • Research Question • Methodology and Methods • Findings • Implications

3. Background and Significance • 46% of elderly home care recipients experience urinary incontinence (UI) (Du Moulin et al. 2004). • Principal cause of long term care admissions & breakdown of caregiver arrangements. • Can be managed conservatively, however caregiver & care recipient health undermined; annual in-home Canadian costs of $2.6 billion. • Caregivers often lack experiential knowledge of continence promotion and UI management (Jansen & Forbes, 2006).

4. Definition of Knowledge Translation • a process • the creation, enactment and application of knowledge • informed by pre-existing personal knowledge, practice and preferred sources of information • social interaction (CIHR, 2009; Nutley, Walter & Davis, 2003).

5. Problem Statement Limited knowledge of: • Caregivers’ experiences of KT, specifically for UI management between and among home care providers and home care recipients.

6. Research Question What is caregivers’ experience of UI KT between and among paid home care providers?

7. Context of the Research

8. Methodology and Methods • Hermeneutic interpretive phenomenology • Discovery and understanding • Sampling Strategy • Maximum variation • Ultimately 4 caregivers • (theme saturation) • Appropriateness • Adequacy

9. Findings • Family Caregivers’ Experience of UI KT as a ongoing dynamic relational process of Working Together/Not Working Together

10. Methodology and Methods Data collection: semi-structured in-depth interviews Analysis: immersion and crystallization Authenticity and Credibility: • audio-taping, transcription • reflexivity, memos • member checking • field notes, peer review

11. Working Together/Not Working Together

12. Working Together/Not Working Together Compromising Appreciating Understanding Encouraging Knowledge-seeking Listening Trusting Not Compromising Not Appreciating Not Understanding Impeding Knowledge Seeking Not listening Not Trusting

13. Working together/Not Working together: Sub-Theme Compromising We ... compromise – it is not always our ideas that we implement. We should always be open to change to some else’s [provider’s] idea. Not Compromising I said ... “I would teach everyone how to do.” It was really frustrating to me that everyone had their own way of doing [and persisted despite teaching efforts]. I just backed off, so we were not ... working together.

14. Working Together/Not Working Together: Sub-Theme • It’s like a mirror ... I know you [provider] appreciate what I do as a caregiver, and I appreciate you. It mirrors back and is like an exchange. You go away and I go away, and everyone is happy – I feel good about myself and you feel good because you helped me to learn.

15. Working Together/Not Working Together: Sub-Theme • It was hard to follow what they were trying to teach me … they did not appreciate that I knew what worked.

16. Working Together/Not Working Together: Sub-Theme • Understand the other’s perspective – then you [care recipient/provider dyad] can talk and do anything together. • I don’t think that they understood how his [care recipient] condition … had deteriorated … and what help and information I needed [for in-home care].

17. Contextual Facilitators and Barriers of Working Together/Not Working Together: Personal Attributes • Respect • Expectations • Sensitivity • Patience • Self Expectations • Inability to Communicate • Knowledge Needs • Authoritative Stance Personal Attributes Working Together/ Not Working Together

18. Sub-Theme: Inability to Communicate Knowledge Needs • They [providers] looked at me as if to say, “What do you want to know?” I didn’t know what I wanted to know. I just wanted some help … I felt like they didn’t understand. I mean, it was my fault too, because I didn’t know how to tell them.

19. Contextual Facilitators and Barriers of Working Together/Not Working Together: Home Care • Continuity/Discontinuity • Consistency/Inconsistency • Time/Inadequate Time for Developing Working Relationship Home Care Attributes Working Together/Not Working Together

20. Sub-Theme: Time for Developing a Working Relationship • Time is important to consider what has to be done. If you don’t agree right away [with learning and teaching approach] … just think about it and come back to it after some thought.

21. Insights and Implications Findings suggest the importance of: • Social interactions, in particular, family caregivers’ and providers’ working relationships to create UI KT. • Relational practice to create KT given insights regarding professional boundary setting, power differentials, & opportunities for knowledge exchange between caregivers & providers.

22. Insights and Implications • Health professional education for client-centred interactive learning approaches rather than providers’ traditional didactic approaches. • Future interpretive research to construct substantive theory of how knowledge is socially created, integrated, & enacted to manage UI and in-home care.

23. Implications • Ultimately, increased understanding of caregivers’ experience of KT may: • Evolve social interaction KT interventions & health promotion approaches for family caregivers & older adults • Create policy-level information exchange to promote understanding of caregiver issues & policy to support caregiver/provider working relationships • Decrease UI costs & long-term care admissions.

24. Thank-you Questions? Lynn Jansen RN, PhD(c) Doctoral Nursing Candidate Arthur Labatt Family School of Nursing University of Western Ontario London, Ontario • sjansen3@uwo.ca Acknowledgements: SSHRC Doctoral Fellowship, UWO Thesis Award, OGS, Canadian Nurses’ Foundation Doctoral Scholarship, Alzheimer Society of Canada, CNF, Nursing Care Partnership of Canadian Health Services Research Foundation, CIHR Institute of Aging, & CIHR Institute of Gender and Health, CIHR (TUTOR)